Pediatric TracheostomiesFor parents and caregivers of children with tracheostomies. Please limit discussion to seeking and sharing of information pertaining to tracheostomy care, medical issues, special needs, disabilities, networking and moral support.

Livonia is almost 18-months-old and she just came home from her two-day sleep study. The nurse practitioner with ENT did not bandage the stoma site or give us any advice, other than to "put a cute little Band-aid on it".

We've tried just about everything to cover the stoma, but the bandages start by bullfrogging, eventually develop an air leak, then start peeling off. I have tried Tegaderm, Band-Aid, Nexcare Absolute Waterproof tape, and Band-Aid Tough-Strips (fiber reinforced like duct tape). At the moment, she is wearing Steri-Strips, covered in silk tape, covered in Tegaderm. The whole bandage is bullfrogging.

Since her doctors apparently have no particular system in place for post-decannulation stoma care, I was hoping for advice as to what I am supposed to do. Has anyone received useful advice from their doctors, or found something that works?

Thanks so much!
Jennifer

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Livonia's primary symptom is hypotonia, causing laryngomalacia, tracheomalacia, bronchiomalacia, aspiration of thin fluids, etc. She is thriving now after a very difficult first year.

We've had the same problem since my son was decanned in April. Everyone said his stoma would close on its own but it never has. It's shrunk some bur still very open. He's having it surgically closed by ENT next week. Just out of curiosity, where in Indiana are you? We're in La Porte, between Michigan City and South Bend.

We were told to just keep it covered for a few days. The hospital used a piece of gauze and tape, and when at home I used a bandaid. We were told to keep it dry until her next appointment with the ENT and now she can get it wet. Addy's stoma is closed, except for a little pin hole, but nothing is going in or out of that hole.

G was decaned on April 29th. His stoma is still open and leaks air and secrtions all the time. We just leave it open and keep it dry. They are planing to do a surgical closer some time in the near future.

My son was decanned this month. We use two 2x2s folded & tape placed over it extending over the edges. The tape is really secure. The nurse in the PICU gave us two rolls as well as two other different rolls of tape. It really works. If the stoma doesn't close completely toward end of July, it will be surgically closed.

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